By Teresa Swartz Roberts
Blog post 24. Copyright 2018
Maybe you’ve seen the commercial, the awful, horrifying commercial. A man looks around his darkened home and sees things that aren’t there. The ghosts are terrifying, right down to the cat that is living out its nine lives in the man’s imagination. He sees his wife in the embrace of another man and talks about “secret visitors.” A voice-over informs us that over 50 percent of Parkinson’s patients will have hallucinations and delusions. Is that true? Well, technically.
People in the end stages of Parkinson’s may have delusions and hallucinations. While there is no across-the-board staging system accepted by all neurologists, the Hoehn and Yahr five-stage system places the likelihood of developing delusions (believing things that aren’t true) and hallucinations (seeing things that aren’t there) in the last stage. I’d like to say here that some people who are dying experience delusions and hallucinations, whether or not they have Parkinson’s. During the week he died, my grandfather pointed at the ceiling and told me, “There’s this bug. It’s not real, but I keep seeing it. It’s black and about the size of my thumb.” The day he passed away, Grandpa told my mother and aunt that he saw their mother. Mother and Auntie couldn’t see her, so she was a hallucination. I prefer to believe that Grandma was there to help him to the other side. But maybe I am delusional.
My point is that the viewer comes away with the idea that half of the people boogying and stretching in my YMCA Parkinson’s Movement class are suffering delusions and hallucinations, and that is not the case. Fifty percent of them may get to that point if they don’t die of one of the usual suspects (accidents–which may happen more with PD patients, pneumonia–which can happen more readily to Parkinson’s patients who have trouble swallowing, heart disease, and cancer) before they reach the final stage of Parkinson’s. Or not.
The math can be a little fuzzy. Another factor that plays into the claim that 50 percent of Parkinson’s patients have delusions during the course of their disease is that some patients are diagnosed with dementia or psychoses before they are diagnosed with Parkinson’s Disease. Some folks are given a dual diagnosis of Lewy Body Dementia with parkinsonism, and others develop PD after a diagnosis of Lewy Body Dementia. In addition, the medications used to treat Parkinson’s symptoms can cause delusions and hallucinations–including the drug being advertised. I acknowledge that psychosis is a real problem that touches the lives of people I care about. What I object to is the frightening method of selling a drug in the guise of community awareness.
You may notice that I haven’t mentioned the medication advertised in the commercial. That’s because the drug is not named. Viewers are urged to ask their doctors about pharmaceuticals for hallucinations during the course of Parkinson’s, and they are directed to a website. I asked my neurologist if he had seen the commercial a couple of months ago because I wanted to warn him that scared patients may be asking him about it soon. He told me he’d seen a print version. So you see the commercial, panic, and call your doctor. And the drug company can truthfully say they have not advertised the drug to the public, and the drug’s side effects and risks do not have to be listed during the playing of the ad. To be honest, I can find the name of the drug online, but I’m not willing to give it any space in my writing.
If I begin to experience hallucinations or delusions, I’ll first talk to my doctor about the volume of dopamine-based medication I am taking. I know that reducing the dosages or taking meds in different combinations can help. I might even decide to live with the hallucinations. Not to be insensitive to those with psychoses, I might enjoy my fantasy life. During the course of my mother’s battle with Alzheimer’s, she took any positive experience told to her as her own. Consequently, she had traveled more widely and experienced more of the world than before. I am aware of someone who knows he has a daydream life and embraces it with the trust a child puts in an imaginary friend. Then, after weighing risks and rewards, I may turn to the very drug that is being touted by the voice-over in the secret visitors commercial. But my hope is that the pharmaceutical company that made this particular ad is not the only one manufacturing the drug. I don’t like being scared into buying a product.